Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

It's one of those two times of the year that I really don't like. Cancer review time. Last week I had to have a PET scan and it was beyond awful. That old chestnut again, my needle-phobia. It was particularly bad last week, they had find one of those tiny little veins in my foot and fit a cannula, but they just couldn't find a decent vein. They had to stab me again and again and it seemed to go on for hours. I just lost it, utterly, totally and completely, and I sobbed my heart out for what seemed like hours.

With a PET scan, you have to stay stock-still for an hour beforehand, once you've had the sticky sugary radioactive contrast injected into your bloodstream. It's actually quite clever; the sugar courses around your body to see which cells are most active, and then it adheres itself to those cells to provide energy for them. It's the cancer cells on the march that hardly ever rest, so the idea is that this radioactive sugar stops when it reaches any, and then the PET scan can see exactly where the cancer is. Obviously, if you're dancing around instead of resting, the sugar will also go to all the muscles that you're using, so it will look like you're riddled with active cancer. So the fact that I couldn't stop my shoulders from heaving and my throat from wailing all the way through that rest period will probably bring some interesting, if scary, results.

On Monday, I've got to go through it all over again, with another injection for an MRI scan, quickly followed by my 3-weekly usual cancer treatment, which will mean another needle. I just know I'm going to be a total mess before we even arrive.

Needle-phobia has to be about the most embarrassing medical condition there is. It's very hard to present as a rational, intelligent and grounded human being when you are exhibiting such a ridiculously childish fear, and although medical staff generally try and be pleasant, you know they really think you must be several pennies short of a full pound. Being a patient is a very disempowering experience at the best of times, and once I've let myself down by behaving like a very silly small child, it's virtually impossible to regain any composure or respect whatsoever.

It's also a little-understood condition because most needle-phobics are far too ashamed to speak out about what it's really like to be overwhelmed with fear when you are in the same room as a needle.

When I was really having a tough time with needles in the early stages of my cancer treatment, I googled for information, and I was disappointed to discover that the vast majority of information is authored by medical professionals, along the lines of how to "manage" people like me. These poor, well-meaning but utterly deluded souls were completely barking up many of the wrong trees, but it wasn't their fault, it was ours. The needle-phobics. We were too timid to come out of the shadows and publicly name our fears, explain them and then help to find solutions.

So I did. I wrote a blogpost all about Needle-Phobia, how it made me feel and what has caused it, and as soon as I uploaded it it flew around the web. I felt very vulnerable posting it, but within minutes I was being contacted and thanked by other needle-phobes from all over the world. You can read the original post here http://yvonnenewbold.blogspot.co.uk/2012/08/my-needle-phobic-past.html if you want to.

That led to me speaking to several medical conferences about the issue last year too. So in a very small way, I'd like to think I've moved the boundaries of understanding a little, although there is still a massive amount of work to do to gain the understanding that people like me really need. Stupidly, I was beginning to think that if I could stand up and talk about it in front of several hundred people at a time, then I must be getting better at coping with needles, too. Last week showed that I must have been kidding myself, and I'm already getting into a flat-spin panic about Monday morning's ordeal.

Then there is the review meeting itself next Friday. I already have a splodge of cancer in my spine, so the very real fear that deep within me, the cancer is on the march to take over and win is never far away. Once the cancer has broken loose from it's original site and spread elsewhere, it's not great news ever. It means that the disease is incurable, and that it's only a matter of time before it kills you. How much time, however, is anybody's guess.

I'm lucky that I had breast cancer, because it is one of the cancers where there have been some real progress in controlling advancing breast cancer, and if the treatment works, it can hold it at bay in many cases for some years. For 5 months out of every 6, I can almost forget that I've got this timebomb ticking, and just get on with the business of living. With the review meeting looming, we're now into that dreaded sixth month, and every ache, every pain, every twinge, every tummy rumble, and I know, with complete certainty, that is all must be cancer.

As it happens, I've felt pants anyway since before Christmas. My energy levels are running on empty, I'm just always exhausted, and everything is a huge effort at the moment. Of course, there's an awful lot going on too, like putting the finishing touches to "The Special Parent's Handbook" before it goes off to the typesetters in a week or so. That really is taking up a lot of time and mental energy with still so much to do before it's ready.

Then there is my Grandson on his way in a couple of months, all exciting but any change is unsettling. The hardest to deal with is all the heartbreaking stuff around Toby moving out, more than I can deal with emotionally at the moment, plus the actual move is gaining momentum and that means there are a lot of planning meetings to attend and lists upon lists to compose as well.

I'm also horribly behind with the ever-growing paperwork mountain. I made a very depressing list of outstanding things to do admin-wise this afternoon, and it ran to three typed A4 sheets. So I tried to get one, just one, of the nasty little tasks knocked on the head. Four hours later, having been up ladders, down ladders, going through 18 ring binders of filing and 4 huge plastic boxes of yet-to-be-done filing, I finally found the crucial piece of paper I needed to complete this one stupid, single bureaucratic nonsense of a task.

Don't even ask me about the housework. You can't write a book of 65,000 words in a few short weeks in my house with my family, and also manage to keep everything fine and dandy and dettolled. Mostly I've had to write the whole book in 3-word bursts before the next interruption, unless I stayed up half the night to catch up. Which I actually did quite a lot.

So there are a hundred and one reasons why I'm probably totally spent and out on my feet, but with that review meeting looming, the only reason I can possibly buy into is that it must be the cancer coming to get me.

By the time the day arrives, you know with such certainty that you must be so riddled with it that you're highly unlikely to last out until bedtime. If that were to actually happen, I would be so narked that I let them stick needles in me for absolutely nothing that I'd probably haunt the hospital scanners for years to come just to get my own back. I also stupidly double-jinxed it last week by buying an annual car parking ticket. If I pop my clogs before the year is up, do you think if we asked nicely, they might let me rest in peace in my very own parking space?

So, with the weekend looming, and let's be honest, we all now know it could be my last weekend ever, what's to do? Take it easy and chill? No chance! I'm off up to London on a super-intensive 3 days course, staying in a really swanky Central London hotel on a mega-cheap deal. WM is coming too, and we are intending to make it a mini-holiday. Living on the outskirts of London, I've never stayed in one of these iconic hotels before, it always seems like an extravagant waste of money. My stamina at the moment, though, is so pathetic that I simply wouldn't last the weekend if I had to do the commute on a strap-hanging train then a tube 6 times in 3 days. Any excuse. The course is book-publishing related, my favourite subject at the moment, so I really can't wait.

I've still got to pack, sort the kids out, make sure everyone has clean clothes and meals planned for the whole weekend, and work out why we have a flood under our dishwasher as well before bedtime, then it's a 6am start for a full-on weekend. I'm yawning already and it's not even 9pm yet.

Friday, 24 January 2014

So many people have said such nice things about the YouTube video I posted on my blog, yesterday, that I really thought it was only fair to own up and tell you what a total fiasco the whole thing really was behind the scenes. We first did a video blog a couple of weeks ago, intended to accompany the blogpost I did about Christmas. However, if you're writing about Christmas, it's generally a fairly good idea to keep it vaguely contemporary, it somehow doesn't have the same impact several months later in late summer now, does it? The blogpost had been written and ready to go for days, and we were edging rapidly towards New Year, and the YouTube video was turning into a nightmare. WM, who I haven't referred to in months, is my lovely, loyal, tolerant, endlessly-patient, will-put-up-with-me-at-my-absolute-worst other half, the person who has carried me through the whole cancer nightmare, and even though he isn't their Dad, loves my kids virtually every bit as much as I do. Well, WM (who is too shy to be named on the blog, but was enormously and hilariously embarrassed to be nicknamed WM, which stands for Wonderful Man, and the name was soon adopted by everyone who knows him) wanted to use his ipad. I wanted to use my Samsung Galaxy phone. He won. Yeah, OK, so the quality looked great, but I didn't know how the get the blasted video out of his ipad, onto my Windows 8 laptop, and uploaded to YouTube. Why do these simple things take days of head-banging frustration while you almost lose the will to live? Days upon days upon days of techno-hopeless me trying to make it happen, while WM and everyone else who stopped by in my hours of need couldn't resist lecturing me on the relative benefits of Apple versus Microsoft, and how, if this book ever earns me a crust of two, I must go out and buy myself a MacBook immediately. They just missed the whole fat salient point which is, had I got my own way and WM had used the Galaxy phone in the first place, none of this would have happened. Eventually, several nervous breakdowns later, I managed to do it, but it certainly wasn't with good grace, and it was well after I'd given up and gone ahead and posted the Christmas video anyway, determined to get it out there before bikini weather took over. So, yesterday, the new blog was written, and I decided to try a video again, only this time I stamped my foot and threw a hissy fit and absolutely insisted on filming with my phone. There we were, 10am yesterday morning, in my dining room, actually doing it. Word perfect, with the smiles in the right places, and 35 seconds in, WM decides that he needs a tripod to balance his wrist on because my phone was heavy. (Funny how he didn't need one for the ipad which is about 10 times heavier? Hey ho). So he gets a dining chair, turns it to face him, balances a coffee table on top, finds another chair to sit on, and we start all over again. it was happy Word perfectly smiley. We get to halfway through. Oh dear, he says, it's not high enough. The top of my head isn't in camera. Now, all my friends and family know that I've got cancer, I didn't think it was fair on them to have them worried in case I'd had a recent lobotomy too without letting them know, so we stopped and rebuilt the tripod. Essentially the same structure, but with the addition of an Argos catalogue, and both A4 hardback diaries from 2013 as well as the 2014 new one, and we started again. Take 3 and I fluffed my lines. Take 4 and the telephone rings halfway through. Take 5 Francesca and Adam started yelling to each other from the top and bottom of the stairs, and take 6, word perfect it might have been but I didn't just forget to smile, WM reckoned I looked like I might kill somebody all the way through the video. It's two hours later by now. I'm close to spitting blood, really narked off and snappy. He thinks I need to chill and relax, so he made me a calming cup of tea and we stopped and had a 20 minute break. He did what he always manages to do when I'm determined to be grumpy, he made me laugh, and the world seemed all lovely all over again. Take 7. Perfect. Fabulous. Smiley. Wonderful. Until two seconds before the end and the doorbell rings. It's a lovely friend of ours, Francesca opened the door and the friend and Francesca came straight into the dining room just as I was about to say something along the lines of Goodbye and Thank You. The friend stayed for nearly two hours, and to make room for her the tripod was dismantled so she could be offered a chair. By the time Take 8 happened, I'd completely forgotten what I was supposed to say, so it was complete and utter rubbish, with a load of umms and errs all the way through too. Take 9 I looked like I wanted to cry, apparently, and take 10 was almost perfect, except that the crumpled up filthy-looking bit of kitchen-roll that I'd used to blow my nose so I didn't actually cry in Take 9 was there, right in front of me on the dining table, hogging Centre Stage. Take 11 was great, but I was looking at WM instead of the back of my mobile phone,and the one that's on YouTube is actually Take 12, achieved nearly six hours later, and is probably so awful that I'll never be able to bring myself to watch it. I did watch the first nano-second and saw that hideously cheesy grim grin of mine at the start, and that was far too much to cope with. However, I simply couldn't do an unlucky number 13, it was never going to happen, so I decided to go with the cheesy grin one and weather the consequences. How do film-stars cope?Strangely, everyone is being lovely about it. I even got called "glamorous" on Twitter earlier, which just about made my evening, even though I know the poor deluded so-and-so probably just needs a very good optician.

Anyway, just for posterity and to give you another laugh, here's the original Christmas video, filmed on the lovely jubbly ipad.

If you haven't seen the cheesy grin one shot on the Heath Robinson tripod already, here is the link to it too.

It's been a great day today, I finally finished "The Special Parent's Handbook" at about 3am on Sunday morning, and then I emailed it to eight very special people for feedback, people whose judgments I really value. Three of them are special mummies, all with their own children facing disabilities, one is a very dear friend I met over 16 years ago, when Toby was in the next Intensive Care bed to her son at Guy's hospital. For several long, difficult months we also lived in the same Ronald McDonald House just around the corner from Guys, along with 6 other long-stay families, all of us coping with the worst times parents can cope with. Whereas my Toby eventually recovered and came home, her son wasn't so lucky, and he didn't make it. I think of him every single day, and count my blessings. In the book, I've included a chapter on coping with your child being so desperately poorly that they are ventilated and in ITU, and it felt the right thing to do to also cover what happens if your child dies. It was a heart-wrenching chapter to write, and I felt a bit of a fraud because, although it nearly happened to Toby countless times, I was one of the lucky ones. I needed to be sure that I had hit the right tone in terms of sensitivity, so there was only one person I trusted to be judge and jury on that one. This lovely friend agreed to read it and promised to be brutally honest. Well, it means the world to me that she feels it absolutely hits the right note. The other people who are reading it are - a really supportive GP, a retired Social Worker who has known our family for nearly 18 years, and my ex-next door neighbour who is also a teacher. Then there is the Publishing guy himself, whose feedback has had me dancing around the kitchen nearly all evening. He was so generous in his compliments and started his long feedback comments with the phrase "Absolutely fantastic and a very inspiring read". Well, you can't do much better than that, now, can you?! It's also beginning to get a little bit exciting now. On Sunday, we had Rachel Raphael, a very talented photograper, over to our house for the whole afternoon to take some shots of us for book publicity purposes. It started as nerve-wracking, but by the end of the session I was just beginning to feel like a film-star. Apart from having the perfect face for radio, that is, of course. It will be a couple of weeks before we can see everything that Rachel captured, but she has very kindly already let me see a couple of the shots ahead of time, and I'd love to know what you think. I think black and white makes everyone seem just that little bit more classy, don't you think?!

It's interesting how many very difficult emotions have been brought back up to the surface whilst writing the book, things I thought I'd dealt with many moons ago. Some of it has made me very sad at times, other bits have made me so angry at the way the very people who are paid to support families like mine have let us down time and time again, making what was already an intolerable situation unbearably worse. It really hasn't been easy to write at all, but it's probably done me the power of good to be able to take out all the memories, good ones and bad ones, and look at them again from the distance of time, and put them to bed in a more peaceful way, perhaps. In writing the book, I also had to do a fair bit of research, and I wanted to read other books on similar topics. Apart from anything else, having books to read gave me an excellent distraction at times from the task in hand of getting my book finished, holy moley, any excuse! It was a brilliant excuse really, a completely guilt-free one, because it was "research" rather than "procrastination"! So I bought 5 or 6 books covering similar, but not identical issues, and surrounded my laptop with them on the dining room table. If you ever came to my house you would wonder how I ever got anything written at all with the constant comings and goings, dramas, crises, interruptions and Toby's screamingly loud Barney the Purple Dinosaur videos inches away from my ears. That's not to mention the constant stream of family and friends and Uncle Tom Cobbley and all that pop in to help or for a chat or a cuppa. Piccadilly Circus is an oasis of calm compared to my dining room. There was one book that kept disappearing. I found it on the sofa, in the other room, on the stairs, even in the loo once, in our kitchen .... people just kept picking it up and wandering off to devour it's contents. I now have a long list of people who want to borrow it, and most of them have now gone off and bought their own copies because they are impatient to read it and finish it. Eventually, it stayed still long enough for me to get hold of it and read it too. That was a mistake.... because I couldn't put it down, and I finally finished it in one sitting at 5am in the morning. It's called "Beyond My Control" by Suzan Collins. It is a truly harrowing read, but also essential reading for anyone, like most of us, who may at one time or another, have someone we care about dependent on hospital inpatient care.

It details the story of Suzan's mother, an elderly lady with a physical disability but who was mentally still as sharp as a pin, and how a catalogue of appalling neglect, incompetence, apathy, poor nursing practice, cover-ups and error after error caused her completely unnecessary death following months of equally unnecessary agonising pain, misery and a total loss of dignity. It shines a spotlight on what is actually happening in many of our hospitals, how management has lost it's way, how it's all about shifting blame or covering up rather than taking responsibility to ensure it doesn't happen again, and how ward staff often can't see what is so blindingly obviously neglect that they are inadvertently delivering instead of care. The most shocking aspect of all of this is that Suzan herself has worked in the Care Sector at a very senior level for over 30 years. This is a daughter who understands the system, who knows what constitutes basic standards of care, and who is intelligent and articulate and still, despite all of this, she was powerless. Suzan did everything she possibly could to help her mother access the level of care and concern that she both needed and deserved, and yet it got them nowhere, such is the size of the machine that the NHS has become. It begs the question, if Suzan couldn't right the wrongs, what hope have the rest of us got when it's our own vulnerable relatives in hospital? Well, the book addresses this aspect too. Suzan has included advice and information about how to make the system work better for all of us to learn from. This is an essential book to read, and one that is best read when everyone in your family is well and healthy, please don't wait until there is someone you care about already in hospital and falling through the cracks where the care should be. Reading the book certainly got me thinking about the whole issue of care, compassion and how they are so often missing from everyday life on a hospital ward. Sadly, the nursing staff almost universally entered their profession because they cared so passionately about helping people, and lightening the load of the sick, the injured, those in pain and their families. On many wards up and down the country there are still huge numbers of caring, hard-working committed teams of nurses who strive to attain these ideals. What is hard to understand is that so many of these teams are working within an NHS culture that isn't supporting them in their efforts to care compassionately about their patients. In some areas of the NHS, nurses are finding it just impossible to care properly because the culture is blocking their best efforts. It's not the fault of the individual nurse, it's the fault of the system, which seems to have sometimes lost sight of what the priorities should be.I know from my own experience with Toby having been in hospital countless times, how a good nurse can make all the difference. A smile, a pro-active approach to pain management, a comforting word here and there, the time to stop and talk and make you feel like you matter - these are all things that reduce fear and engender trust and confidence, and once that happens patients are happier, and happier people actually get better quicker because their immune systems are stronger. It's a no-brainer, really, but somehow the system often makes it impossible for even the best nurses to do these things that they can do so well, and that simply is unacceptable.Until the priorities change and nursing staff are allowed to care for our families and friends in the way they want to, and have the time to notice when things are amiss, and their management adopts a more open approach to admitting failures and mistakes and working hard to putting them right rather than compounding them by pretending they never happened, it's up to us to ensure the on-going safety of our hospitalised family and friends. We all need to be aware of what may go wrong and what steps we can take to put them right. Suzan Collin's book, "Beyond My Control" may make you weep buckets as you read it, but it may also give you the skills you'll need to advocate effectively on behalf of a loved one. Let's just hope what happened to Suzan's mother never ever happens again, and that things can and will significantly improve for everyone, patients and nurses alike.Just to finish, I've done a little YouTube video about this blog post too. I hope it's OK, I'm just too embarrassed to watch it the whole way through! Please let me know what you really think, as long as you can stop laughing long enough!!

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.